mommy and her bear 26.11.2010

Disclaimer.

First of all, let me tell you a story.
As a teenager, I had an incredibly disorganized room. It was quite a notorious mess and there should have been a photo of my room in the dictionary next to the word "mess". Really. My mother insisted that I keep the door to it closed at all times because the sight was too unnerving for her to handle.
When I was about 15, during my routine search for Hanson posters down at the mall, I found a medium-sized poster that showed an orange-haired girl in a white nightgown, standing with the most nonchalant face expression in the middle of a horribly messy room. The caption read: My room. My mess. My business.
I bought it, took it home, told my parents what the caption means [they don't know English] and hung it on my room's door, on the outside, right underneath the traditional "Lois's Room" sign. I kept the door closed and the poster was there for all to see - and it served as a warning for what you're about to witness if you dare to come in.
A quick Google search yielded not the original image, but here's something similar:

Photobucket
[image taken from www.cjtent.com]

Why am I telling you all this? Because I grew up to apply the same rule to the apartment I share with my husband and our two cats [except that the "my" is traded for "our"], and I'm applying it to my LJ as well. It means that here, I'm free to write about whatever I want and in the exact way and language I deem appropriate to the subject matter. If you don't like it, take yourself to a room where there's a mess you'll like better. (Для особо любопытных - да, я имею в виду тебя - я же для тебя не существую, так что же ты сюда суёшься? А ну брысь отсюда. Цензуру будешь наводить у себя дома, а я верю, что вещи надо называть своими именами.) I am not particularly controversial - as far as I remember, there were no epic arguments here except for one, and I wasn't the one who started it - but there have been attempts to censor me and mold me to someone else's liking, and I will not bend down to that.
I friend people whose LJs I enjoy reading, both English- and Russian-speaking. I write in English and Russian, however the muse strikes me. Many entries here are friends-only, because some things are more private than others and there's a family situation due to which I don't want to write certain things for public access.
All comments to this entry are screened.
mommy and her bear 26.11.2010

(Post by John about Donations)

I was contacted by one of Lois's LJ friends, asking about to where one could donate in Lois's memory. The two foremost options that come to mind are:

* http://www.spayisrael.org.il/

This organization helps to spay and neuter street cats (and dogs, when needed), including mobile clinics. My mother (a veterinarian) is involved, and they are currently collecting donations for a mobile clinic that would run in the south, including Be'er Sheva, and it is to be in Lois's memory.

* http://www.cff.org.il/Articles.asp…

The English page of the cystic fibrosis foundation in Israel.
mommy and her bear 26.11.2010

Reaching the End

(Update by John.) We've reached the end-game. The blood pressure is too low (80/40) and they can't get it up. The liquids are escaping from her veins too much and she can't pass urine. It could take a few hours, maybe a day or two, but this is it.
mommy and her bear 26.11.2010

(Post by John.)

A follower of Lois's LJ sent me a message, asking for an update. So, here it is: The situation is very poor. She is deteriorating on the ECMO and has little time to get a pair of lungs; even if she gets them, it is thought that she cannot survive the transplant, due to her weakened state.

As such, although I'm not ruling out her tiny chance, the future looks bleak. I take comfort in the fact that she is sedated and no longer suffering.
mommy and her bear 26.11.2010

Update (by John)

(Post by John.)

I post on my Facebook more frequently, I had forgotten about Lois's LJ...so the story is this: Transplant from live donors has been ruled out, as it was decided that lobes would not suffice for Lois at this point, she is too weak; she needs whole lungs.

So we are waiting for a cadaver. If she doesn't get it soon, she will be dead. She is on an ECMO machine, which oxygenates her blood, and complications are beginning, slowly but surely, to arise.

This is the Channel 2 piece that was done on her (in Hebrew):

http://www.mako.co.il/news-channel…

Here is the translation a friend wrote of what was said on the news:

Ella is a happy
27 year old, and next week she might die. That is the truth, and that is the grim
reality of those on the long organ donor waiting list. Despite the rising public
awareness, there are still very few donation. Mother: You're strong. I promise
you it will be OK. Narrator: There is a lot of love around 27 year old Ella
Pechony's bed. She had CF. She is unconscious and on an ECMO machine
since her lungs collapsed, but her relatives believe she can hear them. Mother:
I promise you that you can come home, and you can do everything. Ella has
fought this terrible disease, which kills most patients before the age of 40, all
her life. Fighting, and at the same time studying, getting married and
succeeding at everything. Narrator: Weren't you afraid of getting into a
relationship with someone who might die young? John: Maybe. I was inlove. I
still am. Ella's one chance of survival is a an urgent lung transplant from a
deceased who agreed to donate his or her organs. Prof. Mordechai Kremer,
lung unit manager: She is in a very critical state. Her lungs do not function at
all. We have about a week's window of opportunity in which, if a donor is found
that will give his lungs, we can save her. Narrator: And if that doesn't happen?
Prof: If that doesn't happen she will die. Narrator: Do you think she'll win?
Doctor Blau, Lung and CF unit manager at Schneider Hospital: Yes. Narrator:
But you're a bit teary eyed now. Doctor Blau: I'm teary eyed because I know the
clock is ticking. Narrator: Dr. Jonathan Cohen and the devoted tea at Beilinson
Hospital's ICU are keeping Ella alive in the hope of finding a lung donor. The
CF organization is outside, supporting the family. This is what these struggles
really look like. And they far too often fail. 70 Israelis are currently waiting for a
lung transplant. Unfortunately, about half of them will die, because there are
not enough donors. The Israelis have a big heart and they love helping – but
they draw the line at organ donations. Only 11% of the population have signed
organ-donor cards. Much less than in Europe. Prof: People don't donate. They
don't understand the importance of a donation. We don't have a solution for all
these patients. If we had a lung ten days ago, this patient would not be in this
situation. Narrator: Before we left, we asked Ella's relatives if they wanted us to
hide her face. They insisted we didn't, since it is important for them that we all
understand that behind the sad statistics of organ donors in Israel are people
who want to live.
mommy and her bear 26.11.2010

Lois in Intensive Care

(Posted by John.)

Lois is in the intensive care, unconscious, incubated, and on a heart-lung machine which oxygenates her body for her. Her own lungs have lived out their usefulness; they can no longer supply oxygen to her body.


She apparently develop an infection and crashed as a result. They need to stabilize here, get rid of the infection, and only then can she be eligible for transplant. The heart-lung machine is a temporary solution, and has its risks as well. She will stay unconscious until her transplant.


If someone wants to see her, call me about visiting hours, 052-8-408-970.
mommy and her bear 26.11.2010

(no subject)

Hey all. I'm still in the hospital.

Had two surgical procedures so far, one one of which was a port replacement. Hello, port-a-cath number 3.

I'm on the lung transplant waiting list.
I made it to 28 years and two weeks before I was listed.
Kudos to me for that.
Cheers for 28 years and two weeks.

We are currently waiting to see if I can get well enough to not need an urgent transplant from living donors [one lobe each] but wait for a regular cadaver donor lung transplant. I am breathing with the aid of a B-PAP machine both night and day and the idea is to have me being able to breathe on my own [with oxygen] during the day - then it means I can wait.

I'm still very weak and with very limited internet access, and can't talk on the phone, so sorry for staying out of touch.I'm reading all SMSs, thanks for sending them.

I can't believe I was/am this close to dying.

This is taking ages to write.

This is all very scary.